A blog about raising kids on the spectrum, working with kids on the spectrum, friends on the spectrum. And lots more.

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Thursday, April 28, 2011

Affairs of the Head and Heart.

The last few days have been difficult. And not because of Harri. Iv'e been cheating. There I said it. I am in the process of trying to break up with Harri's current service provider because I am infatuated with another. I have been speaking to, and ocassionally meeting up with the new service behind the back of our current one. Unsure of when to mention I may be leaving. Unsure of whether the new organisation would have us. Unsure about how I will manage explaining to the current why I am ditching them for another.

Two day ago I again met with my new interest. I have secretly been attending with Harri for an extensive assessment process over the previous few weeks. They showed me the results, discussed a way forward, offered me days and times (4 days a week in 2 hourly blocks of ABA) My idea of perfect for Harri. There are also monthly meetings with the senior clinician to ensure we are on track. And monthly parent meeting to discuss topics such as sleeping, eating, discipline. Allowing me to meet other ABA minded parents. The ABA sessions are done in centre, eventually moving into the home, and the senior clinician (she has a Phd in Behavioural Analysis) also helps to negotiate with school and develop supports for him once he is old enough. The whole model is my dream. Organised, structured, clear, and with a social element for both Harri and myself.

Harri's current service providers are incredibly knowledgeable, but administratively I feel let down. There has been no consistency with days and times or staff for the last 6 months. We are lucky to get 3 hours a week, with myself left to do the rest of his sessions at home. It is home based, and leads to a sense of urban isolation for me, as Ive blogged recently. Whilst they completely get the child with ASD, there seems to be some mind blindness about the parents. And as the child lives within the family context I would think that's no small issue.

Anway I am now idealising the new over the existing service. I found the courage to mention we have been offered a place in this organsation to our current therapist the other day. Once the news began to sink in she rushed to tell me all the negative aspects of their ABA approach. I had no idea even within the ABA community there was a schizm in ideas and interventions. Particularly it seems in relation to teaching language. We were standing at her car during this conversation, and it had started raining. Like one of those poignant movie scenes where the two lovers on the verge of going their separate ways, we stared at each other, wet hair and strained faces. She asked if I had made my decision yet, and I lied and said no, I was still considering our options. It was the equivalent of the "It's not you it's me" line in trying to ease the evident sense of rejection. The rain became so heavy we quickly agreed to continue the conversation when we saw each other next (that's today folks). I walked away feel anxious, confused and sad that this process is so hard. These are the people who helped get Harri's diagnosis so early when other professionlas did not see it. These are the people who introduced with skill and patience my son to his current program. These are the people responsible, in part, for his progress over the last 6 months. I feel desperately guilty for turning away from them. So thankless and ruthless. Another layer of complexity added is that my mother is friends with one of the founders of this organisation, which is how I came to be with them in the first place.

I know I have to make the decision based on what is in Harri's best interests. It shouldn't feel personal. But it does. Agonizingly so. Today I will try to make the final split. I feel dreadful about it, and I hope I can manage to do so with good will in tact. I mean, what if it turns out that our current therapist is correct in her negative assertions about this new service? What if I am making a terrible mistake? Will they take us back? Or can I manage a polygamous arrangment and have both services? I suppose in a few hours it will be resolved one way or another. But this has been one of the hardest aspects so far since Harri's dx. I came to this service by default because of an existing relationship. But this experience has opened my eyes to how difficult it must be to make a decision about service provision for most parents when their child is newly diagnosed. It's also tough to know when you think there might be something better if it's worth the upheaval. I suppose I am about to find out.

5 comments:

That is one of the hardest things to do....go with your gut and be honest with them. If they are worth their salt and they should respect your decision and honor what you think is best. And that's just it--if it's what's best then go with it.

Hi Sharon, I feel for you on this one! I was in exactly the same position a few months ago, taking my dd out of her aba school in favour of a more play based therapy and speech langauge and lots of promises. I actually feel i did the right thing at the time and by sept will prob be moving her back to a more structured aba approach. If you feel something is not right and not working I think you are generally right. Your concerns about how the therapies and home life don;t merge were exactly mine and thats why I moved her. Some of it worked out and some promises were just too big! I agree though its so hard, we're given diagnosis out of blue and supposed to be experts...I hope you can decide although I think you already have and I think you've decided correctly

Thanks Lizbeth and Kats, it was really hard. There were tears from both of us. And I couldnt make a compolete break. As I still have her place gov. funded to work with Harri she will continue to pop in once a week to see how things are going. This enable me the liberty to try the new, with the fall back of the old. It also meant I was able to give the organisation feedback as to where I think they could imrpove. They are taking it on board. I slept much better last night.